Thyroid help TSH levels

[thyroidhelp]

Please help my thyroid is ruining my life.

I'm so depressed and it's my thyroid creating the issue.

Originally I was overactive and have Graves' disease but lately my interpretation of results show borderline under active

It's my T2 level is hover at 11-12 and I think it's making me feel shitty and depressed.

TSH is 1.23-2.77 the last few tests over last few months I've had so it's not as stable as I'd like.

I'm TTC and scared shirtless about another miscarriage but more importantly need to control my depression it's killing me. I don't want sertraline etc as worried about impact on pregnancy.

I've ordered some iodine offline and will also possible order some levothyroxine smallest dose just to push TSH to optimal levels but worried to do it whilst TTC,

Just don't know what to do any advice?

My understanding is that as someone with Graves, they cannot dose you by TSH.

If by T2 you actually mean FT4, then that looks very low, even without seeing the reference range, Presumably they haven't bothered to test FT3.

Ask for a referral to an endocrinologist, preferably one with an interest in fertility issues. Thyroid UK hVe a list which might help you.

Hi thank you so much for your reply yes I meant T4 not T2

It has been low borderline for a while the T4 - which tells me I'm likely now underactive?

I just can't seem to make sense of it all

How did they diagnose Graves? Did they check your TRAB and TSI antibodies?

@NaToth I checked my medical notes and it says antibodies were tested and autoimmune disease is present

I’ve been told that thyroid anti bodies can attack the thyroid causing damage and eventually lead to hypothyroidism.

As an aside, where do you find out your levels? My consultant just writes to my GP after each test and no one ever tells me what they are

@NaToth they haven't checked these other things mentioned a what do they stand for and what do they detect? Thanks

@LemonLemonLemon I have to call the doctors a few days after tests and they disclose them to me

It sounds more like you’re anti tpo pos and this was hashitoxocisis now gone hypothyroid

Are you under an endocrinologist?

@LemonLemonLemon I was and recently got discharged so I've put my foot down and asked for another referral.

I also had a private appt last week which was completely useless for £200

Are you still taking meds for graves? You must be careful ttc with graves I have three children and graves disease so its not impossible its just tricky

@Theunamedcat they put me on meds for only a few months and then discharged me recently as levels went back to 'normal' though my t4 is borderline abnormal on the low side and tsh still sometimes high 2-3.77 on recent tests

Tricky in what sense how did you manage to conceive?

With graves disease your body can attack the fetus and you have a miscarriage you have to take different medication during the pregnancy and levels closely monitored I was classed high risk on all three of mine because of this

The medication for graves can cross the placenta and cause issues with the baby so I was changed to PTU which still crosses but doesn't cause the skin issues carbimazole does

@Helspopje , that's what I'm thinking. Any road up, it needs sorting out by someone who knows what they're doing.

After more research last night I'm going to buy thyroxine online and take 25mg myself and see what happens

I feel from the readings it must be underactive slightly and to get to optimal levels this seems like the o my option

After more research last night I'm going to buy thyroxine online and take 25mg myself and see what happens

Do NOT do this.

You cannot self-diagnose, regardless what 'research' you've done.

Go back to your GP. Discuss your concerns and ask them to explain your results and the decisions that have been made. Take it from there.

Also, 25 mcg (which is what I assume you meant?) is a tiny dosage, unlikely to do anything.

See your GP in the first instance. Insist if you have difficulty getting an appointment.

Self medicating is not the way to go.
Your Graves needs to be resolved before you TTC. Graves is dealt with by radioactive iodine, a sub total thyroidectomy or by long term medication. The latter option is not optimal if you are TTC. It would be much better to zap the graves although undoubtedly you will end up hypothyroid but that's a much more stable condition and much more easily managed. There's also better information about thyroid and oregnancy now than over 25 years ago when I was in this position.

For what it's worth op, I had graves which was treated with carbimazole which tends to pull the levels into hypo after a while and therefore the dose is supplemented with levothyroxine because it's easier to manage thyroid up than down. This all happened around my engagement (in 1991) and we wanted to start a family as soon as we were married. I elected to have a sub total thyroidectomy (worried about radioactive iodine and my gonads) which was a success but it inevitably rendered me hypothyroid and I took 100mcg levo until menopause when 112.5 was required. Annual blood test.

DC were born in 1994 and 1998. There were miscarriages but there was no clear link with thyroid back then and management in LG was fairly hopeless although was en pointe in 1998 when for a variety of reasons I was viewed as high risk and needed consultant led care.

You need to get your condition stabilised and to see a good endocrinologist to help, probably privately. I have found the British Thyroid Foundation to be an invaluable resource. Can recommend someone if you are in SW London/Surrey.

Thank you - I appreciate self medications sounds like a bad idea but I'm not seeing my
Doctor they know NOTHING or very little

I asked my GP for tests last week for T3 and reverse T3 and TPO she said no would not give them to me and that my symptoms must be due to some other condition.

I can't leave my life in the hands of these people.

@RosesAndHellebores also I don't even know why my graves is now borderline underactive it's just all confusing and frustrating the heck out of me

Graves ebbs and flows in my experience, particularly if you have been medicated for it. Please find a good endocrinologist who will make recommendations to your GP. I appreciate this will probably have to be private but if the key motivation is management around pg, babies and children are so expensive anyway the cost will be a tiny proportion of having a child.

Do get in touch with BTF for advice - I think they have a support line for thyroid and pg.

Good luck.

Go on TPA UK website
Lots of good advice on there, agree 25 mcgs would not make any difference to you at all, you need a proper dose and to be monitored by an Endo or monitor yourself with research.
GP’s training is woeful in this area, demand a referral to Endocrinoligist but be prepared to stand your ground for treatment with them too, as it’s so easily dismissed as its mainly a female disease.
You can get private blood tests to check all thyroid levels, it’s awful we have to pay, but sometimes it’s only way to take control of your health

I agree with other PPs, do not self medicate!
I was diagnosed as sub clinical hypothyroid with antibodies present when trying to conceive. As soon as I got a +ve result they started me on 25mg LevoThyroxine and subsequently changed doses to get to optimal levels. If you are artificially changing levels ahead of this you could be at a huge risk of giving inaccurate readings.
I'm dreading the prospect of being taken off it after pregnancy but would rather have true readings to prove my symptoms and get treated accordingly.
Definitely push your GP for further tests and start monitoring your cycles as these were what triggered my investigations x